look for the sides and bookstores this coming week, and watch for the authors in the near future on booktv and on booktv.org. >> now from the 2013 harlem book fair, a discussion about science and health. this is about an hour and 15 minutes. >> so, our first them, our first panel is titled raise, science and health. or i introduce our moderator, i also want to acknowledge rich who worked with me tirelessly as marcia said in polling these panelists together, discussing and coming up with the idea of what are the conversations that we're going 2%. what are the conversations that

impact us as a king in the and we should discuss to see if we can find a way in or a way out. so again thank you so much for your attention. our moderator for first panel is professor sheldon krimsky. he is the author of "genetic justice" -- "genetic justice: dna data banks, criminal investigations, and civil liberties." is a professor of humanities and social sciences. he sits here at tufts university. and visiting professor at brooklyn college. please welcome professor sheldon krimsky. >>t's a real pleasure to be

moderating this distinguished panel. and my job is to simply put forth a question of conversation so we get started very quickly. first of all let me introduce the panel members. to my immediate right is alondra nelson, was written audience -- who has written "body and soul: the black panther party and the fight against medical discrimination." [applause] >> to her right is samuel roberts, who has written "infectious fear." [applause] to his right is jonathan metzl who has written "the protest psychosis." [applause] and last but not least to his right, harriet washington, whose

book "deadly monopolies," please give her a welcome. [applause] so i'm going to start the conversation among us by first asking, what mythologies did we all learn from writing our books that we want to share with the audience today, and discuss amongst ourselves? i'm going to start with three myths that i learned from writing "genetic justice," which is really about forensic dna, you know, when you watch all these crime programs on tv, dna rules. so these are the three myths that i learned. first of all, myth number one. that dna profiles are like

fingerprints. not true. very different. myth number two is that dna evidence is infallible. also not true. it's not infallible for prosecution and it's not infallible for exonerations. myth number three, collecting dna profile is race neutral. that's also a great myth your celebrity turnout to alondra, and maybe you can tell us what some of the myths were that you discovered in your work, body and soul. >> good afternoon, everyone. good afternoon, parliament. thank you. a few for the introduction, sheldon to i guess my are more three truths than three myths. i begin my book "body and soul" with the sentence health is

politics by other means which means when the talking about issues of health and science, that we can be talking about test tubes and laboratory benches and advanced scientific research but we're also talking about contests over challenges to resources over health care access over access to scientific information, health education and the like. so that's one truism. the second is that the civil right tradition, the black freedom tradition, the black protest tradition was always a health activist tradition and to help politics tradition. so we can think back to the organization which had a cadre of nurses called the black cross nurses. we can think back to the powerful -- who talked on the stoop when she was advocating for civil rights about being sick and tired of being sick and tired, and give us the poignant euphemism mississippi acting deputy me -- mississippi

appendectomy. an issue about that's been in the news last couple weeks in california. and lastly, i want to offer for you the black panther party was held social movement. the black panther party is a kind of rorschach test i think i would think about black politics in the last half of choice century in particular, i think what we don't appreciate is that they were deeply engaged and involved in issues of health activism, health equality of access to medical care services in the united states. and in particular as a discuss iin the book they were engaged n giving people information to an access to services that were under mentioned. that we didn't know enough about, that the services were underutilized are not provided in of such as sickle cell anemia and also at a national network of basic health care is provided a sick health care services. and notably and i given

ierobably know, "medical apartheid," the black panther party was engaged in protecting black commission over exposure to the bad forces of medical extreme edition. the are right about one instance of this. i'm sure there are others and hope that other scholars will carry this for but the black panther party participate in the 1970s in california and a struggle to stop the university of california from introducing medical protocol to medical research that would've just fortunate affected lack and brown men and boys in southern california. so they provided late services and ways to respond to a black communities were underserved and also protected a black commission way in which we were disproportionately overexposed to the worst forms of medical research. >> thank you. samuel, what about your findings? >> thank very much. good afternoon, everyone. i, similar to alondra, i found

some truths as was the myths in my work. i focus as a historic on the late 19 to the mid-20th century which in a lot of ways involves the air of jim crow but also the era of the birth of modern public health in the united states. and in doing so i found that for many black communities which are increasingly urbanized communities that does one particular disease that claimed the most lives, one cause of death, which above most others claimed black lives and that was tuberculosis. this was contrary to the myth of racial predisposition, was actually one of living conditions and poverty. so in many ways we find that the very birth of public health in the united states this mythology that black people are dying from tuberculosis because they are racially predisposed when practices way of masking some of those quite impoverished and just plain out terrible conditions in which black people were forced to live.

this was largely a product by the way not incidentally of residential segregation and exclusion from many jobs. the truth -- that was the first truth. the myth, the first myth is that i found is one of kind of race neutrality of public health, the way you mentioned, sheldon, about the myth of dna and genetics, or forensic genetics, pardon me. we tend to think in history of public health as rational science that is emerged as a way of taking society and epidemiology but, in fact, the very -- the very birth of a we find racial assumptions which worked quite often to the judgment of the people it was supposed to serve. and then finally second truth i found is that much like alondra has mentioned in her study, that there's always been a black health activism. the question is where do we look forward. if you always think about the men, usually white men in white coats in hospitals that is being

the locus of health of knowledge production we may not find advocate americans in the early 20th century. but, in fact, we find clubs, ymca, ywca, churches masonic orders all being very much engaged in their community and environmental health in particular. thank you. >> jonathan, what about your findings? >> again, thank you so much. it's really picture on her for me to be here today. i worked on race and mental health. i'm trained as a psychiatrist and a look at the kind of historical trends about racial disparities in the diagnosis of different kinds of mental illness, and the research i did for the book and i continue to do looks particularly at race-based this diagnosis or over diagnosis of schizophrenia in black man. kelo might know this, but starting i and about the 1960s the racers of research findings

that found kind of out of the blue that all of the sudden people discovered that this illness as a schizophrenia was being overdiagnosed in black man from four, five, six, even seven times more than any other group. to my surprise in researching the book i found that actually this wasn't always the case even though there's a long history of the relationship between race and sandy going back to slave times when we had diagnoses about slaves who ran away must be crazy and other things. but schizophrenia answer was a largely white diagnosis in the united states through the 1950s it and all of a sudden in the 1960s kind of seemingly out of nowhere there was this disproportion overdiagnosis that actually has continued into the present day in which african-american men are dramatically more likely to be diagnosed. this is something that is

actually at odds with genetic science, the way we think about the biology of mental illness because according to biology, or genetics as we know it, schizophrenia is an illness that shouldn't have any race or gender imbalance because it's something that should happen at the level supposedly beneath the levels of race, according to, biologists say should occur in 1% of the world population regardless of who they are or where they live or how they look. so my research looks at the question of why in the 1960s particularly did this start to happen. and also look for specifically at a hostel called the i/o new state hospital for the kremlin same in michigan. where it was large and white hospital through the 1960s and all of a sudden in the '60s and '70s increasing numbers not just of african-american men but actually of african-american men who had participated in black power protests and then members of the nation of islam and other kinds of groups, more

had purchased in some way and different rides like detroit riots. somehow made their way to the hospital and they were diagnosed with mental illness. so that's not a huge the problem think about the ways politics and the diagnoses of mental illness have gone together in this country but i would say the main myth that i look at them one of 40 kind of suggested is that this increased rate of schizophrenia and was somehow the result of something to do with biology or genetics of course a lot of people are arguing that at the time. but what i found was that it was almost entirely a social phenomenon that was linked to a series of changes in the two-hour just put forward, one was that people can there's a lot of anxiety about the political moment and people really were thinking political protests at the time to insanity in ways that sort to make sense to people. and the second was that the

diagnosis of schizophrenia changed in 1968 and the official diagnosis all of a sudden said anger, hostility and projection, which means blaming other people for your problems. so in a way it made it very easy for doctors to see black men who are protesting as mental illness because of these criteria to so that myth number one is biology. myth number two is that this misdiagnosis happened because these doctors were disproportionately races. some kind of -- what i found and doing a lot of interviews was that some of the doctors were pretty well-intentioned and some were not. and so really it was a structure that they were in, the structure of the diagnosis that in a way they were all using the diagnoses. but and so is a structural issue. and the third myth, it's how we deal with race-based misdiagnosis in mental psychology or mental health.

our approach is to make the clinician more sensitive to racial or ethnic issues but, of course, that's very important, but what i show in my work is that actually racist assumptions are embedded in the structure of health care systems. and so i argue that we need to teach the medical system to be what i call structurally competent rather than teaching individual doctors to be culturally competent or culturally sensitive. >> thank you. harriet, i just wanted to say a word before you get your chance. and that is, in our constitution the one right that's listed in it, not the bill of rights, but in the constitution, is the right to take out a patent. amazingly enough, that was built in by thomas jefferson. and your book, "deadly monopolies" questions some about patenting. to tell us what you found.

>> first of all -- >> usurer mic. >> hello, harlan. very happy to be here. an excellent question. i want to point out that thomas jefferson was not actually a fan of patents. he didn't like them very much. he didn't really want patents to be issued. he found -- he bowed to pressure from others. entities that we typically don't think of as patentable, especially things like parts of our bodies, especially things like medications that we need to live has always been hotly contested. but people at issues with it tended not to be people in power. they tended not to be corporations are going to profit from them. so although there was always that tension, gradually through the laws, an this friendliness towards patents by people are going to profit from them triumphs. and now we have a medical system

that uses the patent as, place, something that is expected. i'm not sure if i trust your question fully but i think there -- i think as were discussing earlier in a green room, we had some recent good news in that the patents on breast cancer genes that were held by married had recently been struck down. i think that's a move in the right direction. the mythology though that i want to address is a mythology that, to actually. first of all there's the myth that pharmaceutical companies as a rationale for doing things like patenting, patenting genes, patenting medications which they then charge you in the an outrageous unaffordable price for. their rationale is we've invested a huge amount of money in time and interest in developing these medicatiomedicatio ns so we have a right. in fact, we have a need to charge a lot of money to cover

the cost. without our investment you wouldn't have medications for hiv disease but you wouldn't have medications for tuberculosis, for sickle cell anemia. for all things that threaten our health. so you need to pay us this money so that we can continue providing them. that's a myth. the truth is, the reality is it's not corporations who are investing this money. it's the federal government. what is the federal government get that money? from you, your tax dollars. you are paying for them twice but you're paying for them to be developed with government money and then you're paying outrageous amounts of money first pharmaceutical companies who want to charge you thousands of dollars are medications that you need in order to stay alive over to stay sane or two stay healthy. so that's one important myth. another myth i want to promulgate is something that i hear very frequently. sometimes you hear about research being done and often we hear about research being done in developing companies --

countries, and often there is a complaint that the ethics have not been adhered to properly. people are not being treated, are not being tested under informed consent they have been given the information to agree. they been given agents without the knowledge to so informed consent, other abuses surface. and one frequent response by the company is, well, you have to understand we are testing these drugs for leprosy in brazil. and perhaps we cut some ethical course but there's a high rate of leprosy in pursue. they need these drugs. that's a myth. it is a great need for these drugs in developing countries where the testing drugs but these countries do not benefit. in fact, michael kramer at harvard did a study and he found that within a 20 year span, i think it 20 or you stand that of

the 12,033 drugs invented by pharmaceutical companies, only 14 were for use in developing world. and of those 14, five of those drugs were for animals, not people. others of those drugs were not developed -- in the end, for drugs, for drugs out of 1233 were devised for these of people in the developing world, and yet one-third of all clinical trials by pharmaceutical companies are now being conducted in the developing world because it's cheaper. so that's a myth, a very important myth. so the rationale for these very high prices, the rationale for bypassing the people in developing world and condemning them to poor health, it's a myth. i want to back up for a minute and address another myth i addressed in my article, "medical apartheid." one may say the entire book is addressing the myth and that was a myth to change the law in this country about medical research. it's a very revalent

african-americans have been underrepresented in medical research. and if i say this is a myth people quickly produce that as a show me that i'm wrong. the problem is many of the acting americans have been used in medical research do not show up in the data. the research has been done but it's been done without notations be done but it's been done without the knowledge but it's been done in the shadowy secret weapon and it's also not necessarily therapeutic, a great deal of non-therapeutic harmful stigmatizing research had been conducted in this country without being fully documented over fully acknowledged. so that this myth that we're somehow underrepresented is only true if you're looking at therapeutic research. and that leaves conundrum, it's not very easy set of concept to keep in mind, but we do not remember two things in my opinion and that is that we do need, we do need to be

participants in research because we need to benefit from research perhaps more than any other americans. but we have to do so with vigilance. we have to do so mindfully. went to do so with all the protections and tact which leads me to my final myth i'm going to address here today and that is the myth of informed consent. most of us quite rationally believe that she would choose to engage in medical research and if you recruited, that we are guaranteed informed consent. and by the informed consent i don't mean simply that those researchers asked your permission but that's part of it but he asked your permission to informed consent also entails maintaining information about the study. so you have to be told everything that you need to know to make an informed decision about whether to join the study. you have to give your consent but that consent is ongoing. when new information emerges, to find out for example, that redhaired people don't fare well

with drugs being tested, they have to tell you of the. so you have to get this constant information to the reality is that informed consent is under assault in this country. it is diminishing very quickly in my opinion and again a very occult on the shadowy. it's not something gets a lot of attention. the law was rewritten twice in 1990 and in 1996. the federal code of revelations was rewritten to permit people in this country to be constricted to medical research without their consent. not only the law but also customs. medical culture has become the more and more friendly to the idea of conducting research without asking people's permission sometimes or without you them the full benefit of informed consent. we have to be very diligent about, and is something that i think we should be actively seeking to redress. we should be tring to elima

these holes in informed consent can because they are quite dangerous to informed consent is more than a philosophical extraction. african-americans -- research, ultimately, informed consent is a necessity. thank you. >> thank you, harriet. does anybody on the panel want to raise a question for any other panel member? any thoughts you have amongst yourselves? >> i just want to respond to harriet displacing i think one of the places to look for how black communities can think about responding in be more active citizens and participants in clinical research studies is to think back to the legacy of the black freedom struggle. which is i think in some ways it feels like an uncomfortable or you know not a place that would look typically, but part of what is so important if we can get beyond the demonization of the black panther party is that the way they're essentially engaged in conversations about medical research, they were looking at

protocols, they were going through protocols for a research center at ucla and particularly interest in the ways in which they might disproportionately harm like communities. and so one of the responses i think to the insight you raise in your book is to be more vigilant but a way to be more vigilant is actually to take agency and sit at the table and take agency and understanding and finding information about research studies taking place in your community, including thoset research studies taking place in your community, including those here in harlem taking place by columbia university. >> after i do a body of research, there is something better bring to my own personal life, usually. you know, just a higher understanding of how i'm going to enter after the world. did any of you come to some personal, i don't know,

ipu're going to interact with health care system, with the medical system, or with any of those, with the scientific system from your research? i'll give you one example, and this is from research i've done in the past on conflict of interest in the drug industry, which is probably familiar to harriet, that if i go to a physician and this position is going to offer me a drug, not going to take it right away. i'm going, the first thing i'm going to say is, as i his been approved for this use by the food and drug administration, icfj? doctors have the power to give you a drug that's not been approved for that use. they have that kind of power. and if that's one thing i've learned from my research, it's how to talk to a doctor about the drugs that they're planning

to give me. did any of you reach any insights about your own personalized? >> i'll give the flipside because i think i'm in any position that i'm also, i'm practicing as a doctor, and i had this funny life for half of my life i'm a practitioner and the other half of my life i'm being a sociologist, social critic were a basis to tear apart everything i stand for on all the other days. and it's funny because i've had some moments of kind of overlap where i try to -- i try to keep the two parts of my week separate but there've been some moments where things went research have actually come into the clinical practice t the and one was was doing my first book, "prozac on the couch" that was a book about stereotypes of white women in drug ads.

and i probably spend two or three months writing this critique. there was this big prozac campaign and it was playing with the kids again lake norman of the woman named sue mighty whitey ring and she was all happy playing with the kids. i was saying this star to come to them yet be a white married women to be mentally healthy? what's going on there exactly? then a woman came into my office airing this ad and said, hey, doc, this is me, i'm 20 and i just want to be known. i think at that moment i had to possible answer to one would've been the malpractice and which is i would've said man, which are suffering from is a socially constructed condition and what we do is changes i'd rather than treat the individual or something like that. and i think it would've been the wrong answer. instead what i realized was that racial and gender stereotypes shaped her expectations about the drugs that i made was going

to prescribe, maybe not. and they also shape the way i listen to them and knew what she typically think in retrospect the right answer at the moment was not to say yes or no about prozac or some drug. it was instead to say what does normal mean to you? what are your expectations about this? how do you think is going to change your life? and my own lens of try to raise gender and culture and class, you said if you study culture in action i think is you better insight into the complex simple, symbols of power that pharmaceuticals and the medical establishment become. >> i don't have a personal anecdote per se but what i found in my research, think about the politics of health is the importance of us speaking with each other amongst ourselves in communities, at dinner tables, and whatever you may be about health and health politics.

and i say that because quite often we invest, and no offense to the physician to my right, we invest so much authority with the medicine. and if you read medical studies or if you look at medical journals you find out there are debates to the lay public may be represented as being instead of consensus. in fact, they disagree amongst each other, the scientists, the jury sometimes is out on these things. and quite often things that are represented to us are just plain wrong. it's really important that we talk to each other, that we find information and think about health notches on the individual term that medicine often will have us do, which is to say in the case of mental health this may be an issue of your own problematic self adjustment or you could end up being misdiagnosed. or innocence, there's genetically something flawed with you. by the way, there's some nice

little medicine i can give you for a hefty price to fix that. but when he did think about how our personal health is a part of our community health and our community life as well. those are things that quite often we don't discuss, particularly metrohealth i would take. i would say that probably the upcoming frontiers for black health, how we think about mental health but in too many of our mentally ill are not part of the prison system. for reasons that ought to be thought of as public health or medical reasons. with thousands suffering in prisons ought to be getting clinical care. >> i would add to what sam said. i mean, part of what has changed me as been an increased interest in team unity health clinics and the work at local commissioning on health care, particularly interested in the work that organizations like the clinic --

looking at acupuncture, holistic health care, thinking about the place of health in the committee and as a team unity issue and bringing people both for holistic medicine and also often for referrals to other forms of medicine. so i think karen ford a tradition that public health is maybe the social medicine tradition that is very much what sam was saying about thinking about health but only as an individual issue but thinking about issues of album i call social health. so to be healthy is to live in a healthy community and a society when you don't suffer aggressions every day, where you don't fear for your life from going to 7-eleven, where you can feel safe in your committee and then young and after schools, is all part of what it means to be truly healthy. and i think community health, committee based help organizations play a large role in making this a possibility.

>> has the public health establishment incorporated violence in the public health framework? i can ask samuel that. i mean, is that now dominant, a part of public health? >> it is. there are schools here in the united states which are looking at violence as a problem of public health at johns hopkins is one. johns hopkins numbskull public office to look at that as well. i don't think at this point it is yet part of mainstream public health. that's for a number of reasons, that in a lot of ways we don't think of epidemiology of violence the way we might but am not saying that's the way we ought to do or the way we have to. there are certain epidemiological things about violence. there are ways in which social structures will aid and abet violence. we could think about that in

epidemiological terms. but those are not the only terms. so if it sounds like i'm catching my answer, quite-because i am. there are ways in which public health can intervene but there are ways in which maybe it is not appropriate. another frontier for public health that is particularly urgent and demanding at this very moment is the problem of mass incarceration and prisons. they are we have a problem which is it's a solution which causes more problems than ever solved. many people who enter the system for petty crimes or quite often no crime at all will find themselves burdened with health, medical and public health issues that they had not had prior to entering the system. and that redounds to the community as well. so i think for public health those are two of our more urgent issues. but also have a caveat for

public health is not always appropriate to everything. i'm very aware of the issue the guy with him and thinks everything is a nail. and i don't think public health should always think everything is a public health problem. but we certainly have much to contribute. >> jonathan? >> sam is doing amazing work, and i think that addressing this question from these questions of violence and mass incarceration are best served when we have strong coalitions between historians and the medical command and public health scholars. so is fantastic the kind of stuff you're doing. i'm writing partially now about race and the guns come at the question of gun control. and i would say that this question of violence is unbelievably complicated, just as the statement of fact that will surprise no one, but just like try going out in the world and saying that, for example, gun violence is a public health issue and all of a sudden the art huge established industry and whole states that will come

down on you for not doing that. look at the debate about guns, for example. is a very racialized conversation that even calling it a public health conversation puts you at odds with many other tenements of public health. this question is very, very complicated at the moment. >> harriet? >> yes, and i want to point out in boston, which has a very versus problem with adolescent violence, in 1992 and 1993 there was a thriving public health epidemiology of -- going on. the work of people to lead a project going on in chicago in which he looked at the social dynamics and found some really interesting things. i mean, even things like the fact that he told me that in chicago there are no middle-class black

neighborhoods. and i found that fascinating. you could find white neighborhoods that are middle-class but in chicago it tends to be either or. so there are all these things, may be worth a lot of examinations and but the thing that worked best in boston was that a bunch of, a group of organizations including the harvard school of public health, including a group of ministers, including social work organizations in the schools for the coalition, and during the year in which the coalition's active, there was not one fatalities among adolescents in boston. not one. so that kind of synergy that you mention is extremely important. but i think it's also extremely important to know that initiatives like harvard happened and i don't know what happened to it. i left harvard not long after that the i wrote an article about it, expected great things and then didn't hear anything more. fact is that it has been sen as

a public health initiative, and my question though is, it needs to be seen more widely that way. the other thing is that when we talk about violence i find it really interesting that were on addressing have to issue. what about white on white violence? some time ago, violent racism, such when encountered in the south by civil rights workers and he thought they should be a mental health diagnosis. so how about the mindset of white people are killed black people? considering everything that's happened in the past week, i think that's uppermost in my mind and also a very important part of equation, i think. >> i want to add to that is part of my reservation as well about public health. that weekend, with the best of intentions. i don't, service and is in the public health and has certain amount of investment in its mission i don't want to set myself up as a public health

basher. but it's those kind of assumptions that area points out that we have to be careful. quite often the media assumption is we seek violence and we're see an epidemiology of black violence. we very rarely, you know, what is going on where there's this really scary white aggression. black youth, for example. so i think that would have to be part of the question, and certainly part of our answer. >> you seem to have some ideas about this. >> looking at gun violence, for example, even the numbers bear out. most gun deaths, 19,000 suicides, for example. so in other words, we racialized this conversation the way i think harriet and sam are exactly right, in ways that reinforce the stereotypes. for me it takes it farther and farther away from the hope that

we can actually do anything about it. because it just reinforces the stereotypes. >> is there anyone in the audience would like to ask the panelists, one of the panels a question? don't be shy. anyone? yes. can we get a microphone, or can you step up to the microphone? thank you. >> good afternoon. mine is more kind of piggybacking on what she had mentioned in reference to, until we and knowledge the reason and until we acknowledge the attack on the african -- african-american male, you won't be able to resolve it. whenever going to address it

when are we going to address its? >> does anyone want to attack that? >> i agree with you. absolutely. spent i think the collaboration you mention in boston where the church, the board of ed, and it went in together and mobilized, i think that's a start. because my question initially would be how to go back to my commute in connecticut and implement something to make a difference to help our youth? because i think now if nothing else, first of all i just got done teaching vacation bible school this week from teenagers from ninth grade to 12th grade. one thing, the main theme was family and. with a family reunion we talked about what does family reunion encompassed? and with that communism we went back to people, and your fun, you share stories of the past. and one thing that i said to my students was about one of the words that you see nowadays is

it's a problem, it's a problem although i understand that you try to change it and take things other but the reality is it is still there. but asked them how many of you remember 9/11? most of them remember to remember where they were. and i said, after member last saturday's verdict, and where were your? they kind of -- i said to you member distinct? that's what the holocaust was with african-americans. were ever we were at, whether the jamaica, whether it be in america, it was a sting. and now you understand that maybe a more of a dialogue. because realistically we stopped popular young people. we stopped having the store. we become more afraid of them. and hopefully it will open a dialogue, open to just take time and talke talk to our children. and listen to them and start with something symbolizing hello, or even getting a smile. so i always say basically on a personal note that with the

devil that god meant for good but it was an eye opener and it's something we need to continue to try to embrace in our children come in our committee because it starts with us. thank you. >> thank you very much for those comments. >> i just want to say, i think that synergy i spoke with having all these organizations, all these institutions all have to work together. i mean, i think that's key. and perhaps your organization could be the one that starts the ball rolling, starts the condition. but i think that has to happen. >> as long as we can get some cards from you, if you could give us some support that would be great. >> if i could just act quickly to the also. it's interesting because i think one common thread to all of our work is that we look to history. different kinds of history to find instances of structural oppression, structural violent and structural racism. places where -- and to see where

the system seems incredibly slanted in a very violent way against black men. and it turns out like we don't even need to look at history now but it's almost shocking to me, even some who studies this out open office stuff about stand your ground and all this stuff is there. it's their right now in the present moment. and so alondra you add to that but how to deal with this as it's happening so blatantly. it's not even hidden right now. >> another way of saying what you're saying is to suggest that these ideas about violence particularly as they pertain to black men and black people are foundational to american society. so it's, we certainly want to talk about saying hello and talk about the issues that you talked about in your specific committee i think it's always important to understand that it's not only about what individual are doing.

it shortly helps to say hi but it certainly helped to treat each other better but there's a longer trajectory of dehumanization in american society and a society moreover, that we see manifest in things like drone violence, that we see manifest in long periods of social isolation and isolation for people who are incarcerated, that we see in recent events this week. that is a longer problem. and be called a liar and

nothing's been done about it, it starts from the top, and it flows down. so all i'm asking is we need to acknowledge it as a problem, and once we acknowledge it, we can start addressing it. thank you. >> thank you very much. next question. >> thank you. i'm very interested in having and continuing the conversations about the mythologies of race and watches and how it is that -- and watches and how it is we can have better conversations with our health care professionals. and i was wondering if you all had web sites that the public can go to if their family has been diagnosed with something. how do we have access to these clinical trial databases? if you could give us some names azzam yule roberts -- as samuel roberts were saying. family members or friends have been diagnosed, and it's like where do you go besides going to

the internet? what can we access this information to do our own research and be more proactive in our own health care? >> excellent question. there's a great deal of good, reliable health information on the internet. the problem is there's a great deal of the other kind of information on the internet, too, and the question is how do you separate the wheat from the chaff. i always urge people, yes, research your diseases, things you're told you may have. get the information for yourself, but it's critically important to talk to a physician as well. i know it's not easy. they're allotted 15 minutes, you know, on average to talk to people before their insurers or groups begin looking over their shoulders, but you need -- [audio difficulty] anything to do with your particular case. you simply cannot research your

own condition on the internet and you have it and you're an expert, it just can't be done. believe me, i'd be very happy. but get the information, read it, please, do not do that without discussing it with your md. i always recommend print it out, take it with you, this is what i found, tell me what's going on with me because otherwise you'll never get accurate, complete information. and if you don't trust your doctor enough to do that, you need a new doctor. >> i can just, i can just give you one -- for clinical trials the government has a web site, it's a reputable web site. it's called www.clinicaltrials.gov, and you can at least find a list of the ongoing or the started clinical trials in a particular disease category, and then you can take that tor doctor and say are

any of these relevant to me? but those are a reputable list of ongoing clinical trials that are required to be posted if they are to be approved by the food and drug administration. www.clinicaltrials.gov. and then you put in a disease category, and they'll list 15 or 20 that are ongoing, and then you can bring that to your physician. >> i would also say that there are a number of support groups depending on the condition you're talking about. for mental illness one is the national association of mental illness or -- i think either -- nami is the acronym, and their web site is updated regularly, and they deal not just with dealing with mental health issues, but also public policy advocacy as well. and also in terms of advocacy i

also want to really reemphasize the importance of any kind of political mobilization. you know, we often talk about kind of the medical industrial complex as though it's this huge behemoth that just squashes everything in its path. and, in fact, you know, we're all historians here. you kind of find out the power's often kind of very weak, right? at times if you mobilize in the right ways and just ask all the right questions, you can kind of find where things fray around the edge and actually have an impact. so that being said, grassroots organization but then also some of us, you know, some of us just can be very good at being weeds, right? just a few really bad weeds who ask the right questions over and over again and get people to start asking questions is really important as well. >> i just want to push back a little bit against the advice about the physician. you do want to talk to your doctor, but i would want to

suggest that people start effectively book groups, research reading groups in your community, and expertise and information is kind of diffuse. i don't think it has to be your personal clinician be, maybe there's a neighbor next door who will come and realize the journal medicine with you. maybe there are physicians assistants or nurses working in your community that you know. you probably know a nurse or two, right? so start something like a book club around an issue that you're interested. you can perhaps read the ways in which studies are in conflict, you know? and i think increasingly we have to be sort of savvy readers and consumers and patients. you know, and we can teach each other, and all of us bring different kinds of expertise. maybe there's someone who can say, gosh, there was only 40 people in this study, but they're making these large claims how drugs operate in communities based on a sample of 40 people. so, yes, we want to have these

coalitions, and i think that includes people with medical expertise because it's a particular kind of expertise, but i think it doesn't have to be your clinician. grab that doctor at church and get together and read a medical journal together, you know? it sets a model from the black panther party, for sure. >> and we have a lot of local experts. if you've ever had to care for an elderly parent or someone with a specific condition, you'll find that that person within two or three years is about as knowledgeable as many doctors in a lot of ways. so that person's now a community resource. >> if i may, i do want to add one thing. i think we have to distinguish between gaining health information, always a good thing to do, educating yourself about health in which case i agree with everything that's been said. but in a case where you -- the case that was mentioned was a case where you yourself have been told you have an illness, where you yourself are facing a potential health crisis. in my opinion it's a different

situation. in that case it's vitally important to communicate with your clinician because only your clinician is responsible for your health. this is the person you've chosen to be responsible for you. you have to share all the information with him. you have to trust that person. and this is a person who, this is the only person whose responsibility it is to look at you in particular and see where exactly you fall on that spectrum of illness and exactly what should be done with you. you can't ask other people to do that in other cases, you're not going to be equipped to do that. >> [inaudible] this question is direct to mr. roberts, but the panel could fill in on it. i want to know what is the effect of the food industry to the public health of the people

and, also, the effect of the fda in authorizing certain toxic things to the food. >> i have to say i am not a scholar of food and drug policy except to the extent that research that i've been doing now on drug addiction treatment has dealt with fda policy. my understanding is that there's a lot of critique of how the fda passes some of its -- well, some of the cases that come before it. in fact, i think maybe two of our panelists have talked to fda -- about fda in their work, so i should probably just defer to them. >> the fda -- [laughter] the food and drug administration, it's often touted to be the best in the world. other countries follow the rules of our fda very often, and there are really good people who work there. as a matter of fact, especially

under democratic administrations they tend to be much better. the crying who i wrote the book -- the colleague who i wrote the book with, "genetic justice," used to work for the aclu, and she went and was hired by the fda to be assistant to the director. she's a very good, progressive individual. but the fda, like any other federal agency, has political pressures on them. political pressures. be and that's the problem. because we can't always sort out what those political pressures are. they're often behind the scenes. so some country might ban a chemical from exposure, but our fda says, no, we don't have enough information yet to ban

it. and you know that they're being pressured from an industry group saying ban this call, then our profits are going to go down. so a mixed bag. there are some very good people who work there, they can't always decide things. it has to go up the chain of command, and then eventually somebody says, no, we can't ban this or we can't restrict this. and it, and there are organizations out there that are can constantly watching the fda, suing the fda when they feel it's necessary. and these are good, these public interest organizations help us. and every once in a while they sue the fda, and the courts say you're right, the fda hasn't done enough. so that's the way our system seems to be where you, you know, you have good people working for the agency, but not all their decisions can be reached at the

top levels. and the fda makes mistakes. when they do, they pull a drug off the market. sometimes those mistakes are because lack of information, sometimes it's because the drug companies don't reveal the information, and then they get sued. so there's all kinds of reasons why sometimes drugs get on the market that they shouldn't be or sometimes food add tyes -- additives get into our food, and they shouldn't be. it's a good question though. have to be vigilant. >> it's very difficult to trust the fda. [laughter] um, it's changed a great deal since the time when it protected americans from the ravages of the lid mid. the fdi did not allow it to go on the market here in the states, and it saved countless

ery sick children from being born. in europe there were many, many children born with dramatic birth defects, didn't happen here. that was a long time ago. today 40% of the must money thea receives to evaluate new drugs and new additives to foods comes from the manufacturers of those articles themselves. that's an unacceptable conflict of interest, in my opinion. so i'm, i'm deeply concerned about the economic pressures on the fda. they seem too industry friendly, in my opinion. they approve be multiple drug cans that over the objections of their own evaluators, doctors who work for the fda will refuse to approve a drug, find that it's approved anyway, goes on the market for a few years, causes a terrible toll in illness and depth and then it's pulled from the market often not by the fda, but by the manufacturer itself. why? because the manufacturer pulls

it from the market, the manufacturer can put it back on. so the fda, i think, is a little too compromised. that's my opinion. >> i was actually going to make the same point, that i think that the relationship to industry right now is something that people should be aware of and be wary of because they also, you know, there's all this other nefarious practice, you know, ghost writing, research articles and squelching negative studies and things -- i had this brief career as an expert witness testifying against the drug industry until i found out i was very conflict-averse, so i was a very bad expert witness. [laughter] but the stuff i found going through the files was actually pretty terrifying about the relationship between industry and truck passage. so it's another thing to just be wary of. and i tend to tell patients of might hine to trust drugs with longer track records even though there's all this pressure to get the new drug or something.

>> i agree. i would urge everyone to read summer 2011 "the american scholar." coffer story, it's about exactly this issue, how difficult it is to trust the fruits of medical research partly because the people who run clinical trials, they do a great have been, they can't -- job, they can't catch everything. they can't give you correct information if they've been lied to themselves. and also partly about how the fda has been less than individual atlanta in keeping bad drugs -- vigilant in keeping bad drugs off the market. the title is "flaking for big pharma." >> thank you. >> thank you very much. >> yes. more than you expected to hear. [laughter] >> thank you very much. my question is in relation to informed consent. and what it means in terms of doing research whenou'reoing

clinical trials in terms of controls in research. there are those people given sugar pills and those who are given the actual pill. should they be, should the people being given sugar pills be informed that they have been given sugar pills, and in relation to patents in the medal field -- medical field, should they be banned from the medical field? >> i'm sorry, should what be banned, sorry. >> the patents? >> oh, okay. i'll take the last question first, it's easier. patents should not be banned, but they should be much more strictly controlled. and, in fact, that's what most other western countries do. they permit patents, but they don't permit a 20-year patent life which a cane can easily extend -- a company can easily extend by various, you know,

manipulations. we have too many patents covering too many things, and we allow them to persist for too long. they need to be very tightly reined in and controlled. and there's also a safety valve for patents that we don't use, we don't use enough. this safety valve is that if a company holds a patent on a medication but they are making the medication at too high a price -- when i say a high price, i'm talking about $20,000 a year -- or if they are not be making the medication, but holding the patent so nobody else can make it, then there is a regulation that says the government can step in and say you're not using this patent correctly, we're going to pay you a pee and give it to another company -- a fee and give it to another company so they can make the drug at an affordable price. this is in the law. it can be done, and other countries like brazil and thailand do this. we are reluctant to do this for medications. we'll do it for electronics and

tvs, we need to do that more. in terms of informed consent, what you're referring to by sugar pig doctors call a -- pill doctors call a placebo. one group gets the active ingredient and the other group gets the sugar pill. those studies are are not always operate. they should not always be done. if you have a life threatening illness and you're testing a medication for it and you're testing what you think is a better medication, you hope is a better meld case, and another one already exists, you can't give the person is the placebo, right? that means they're not getting any treatment for that illness, and that's wrong. what you have to do, you can give one group the standard of care, the regular medication people are already using, and then you give the other group the medication that you're testing. that's what can be done. placebos can be used but not as frequently as in the past.

informed consent, of course, is something altogether different. that's when you don't tell someone they're in a study or you don't tell them all the information you should tell them about the study, or you don't share with them all the risks of the study or other information. and that is a, like i said, the serious problem here because it's not that that many people are affected so far, but we're not talking about a small number of people. the study that tested artificial blood only involved 720 people in the u.s. and canada. 720 people is not a lot of people. but at the end what did they find? they found what they were testing caused more heart attacks and depths than the regular standard of -- deaths than the regular standard of care. so you had people dying in the study who never knew that they were part of medical research, who never knew they were in the study. and, even worse, the very year the study ended a new study was

started, the research outcomes consortium study which involves 21,000 people in the u.s. and canada. 21,000 people enrolled in studies where no one tells them they're in research. what happens is they're trauma victims, so ambulances go to attend to them, sometimes take them to hospitals. instead of being given the standard of care, they're given experiment alamo call theties, a whole variety of them, including things that are patented. and why do i point this out? because a patented valve is something that's going to make money for someone if it's approved. so there's a financial incentive. and yet these people, again, have not been -- no one asked their permission. in cases they're not even informed. according to the protocol of the study, you don't even have to tell them their in the study, and this is a very, very dangerous precedent for a country that has a long history of abusing people through the use of studies that didn't use informed consent. it was bad enough when people did it and could be called

rogues or renegades because there was nothing sanctioning it. now people are doing it, and their protected under the law. the rationale is that either trauma victims, you know, they've been in a car accident, they've had a gunshot wound to the heart -- trauma's a very broad category -- and the rationale is we need to do the research, but these people are not in any happy to give consent. but that's not true. number one, no one has tested how many of these seem are able to give consent. i talked to one of them. i found one, and i'm not even a researcher. so i'm sure there have been oh people who were able to give consent if someone had asked them. and the other problem is there's an assumption that the research is more important than the person's rights. the fact is some medical research you just can't do. this may be a case where you say if we can only test it on people who are unconscious, then we can't test it right now. and you give that unconscious person something that you know is going to help them, you know? perhaps we are turning our back

on modality that'll be very helpful, but until we find a way to test it without violating people's rights, i see it as a big problem. i hope i answered your question. >> jonathan, did you want to respond? >> i'll just say one thing very quickly because i know we're getting toward the end here. it's interesting because like now a lot of times when people call the psychiatry clinic i used to work at at michigan, they'll talk to somebody about research before they even see a doctor, something like that. the relationship between especially medical academic centers and research right now is very close. almost -- i mean, some people are seeing researchers and, you know, while they're in a time of crisis before they're even getting treatment and stuff. so i think these issues are going to be increasingly important be as we move forward because it's how a lot of academic centers are getting funding now, different kinds of research. >> one of the things i've learned over the years is try to

avoid drugs as much as you can. [laughter] try every other method that you can think of, diet, whatever. [laughter] [applause] you know, there are times when you can't avoid it, you know? antibiotics. and if you can't avoid it, you can also ask questions like the questions harriet -- first of all, you you can ask how long hs this drug been on the market. because if it just came on the market, we haven't tested it on enough people yet to know how safe it is. but there are always going to be side effects. almost every drug has side effects. and if you're the lucky one, you won't get it. but, you know, try to avoid it. doctors -- and they're all good intentioned -- will want to give you something even if it's not necessary and you have to decide

yourselves what's necessary, how low do you want your cholesterol to be. you know? so anyway, there's another, another question. >> all right, thank you very much. >> hello. >> my father recently died. he had mad cow disease, cjd? and my question is i didn't think it was here in america. i thought it was a myth. i didn't see any african-americans with it. so now i know, he's passed away, and i was just wondering since y'all are in the health field, is there any study, any research, any information out there of how many african-americans are dying with this disease? because we've been going to workshops, we've been going to conferences, and there's not that many african-americans there, and i haven't seen that many -- i haven't seen much literature on it pertaining to

african-americans. so just wanting to know do you know anything, any books, any research, anything out there? because i want a different perspective than what i've been getting, and i just want to narrow it down to, like, african-americans and how it's hitting that population. >> i think jonathan actually is -- one thing i do want to say, though, is i spoke with laura who's a researcher at yale who studies -- [inaudible] and she told me, it's her opinion that many cases of alzheimer's and dementia in this country are misdiagnose nosed. >> yeah. >> it seems as though it's hard to get a handle on how many cases there are. it's not looked for routinely, so that means it's really hard to get good data on how many people have it. >> okay. >> let's exchange e-mails after the panel -- >> thank you. >> -- and i'll find out for you. i do think there are related forms of enreceive lop think.

i don't know the racial breakdown for cjd, but i do think there are other forms of enreceive lop think that have been studied more globally, and there might be data outside the united states. >> okay. >> is it a myth that mad cow disease doesn't exist in the united states? >> yes. >> clearly. >> yes. i didn't think it was here. when they diagnosed my father with mad cow disease, i thought what in the world? i'm thinking, i'm like, mad -- are you serious? and i didn't think it was real. and then when i started looking up -- >> can i ask you a question about that? i'm very sorry for your loss, you know, my con condolences. what are you looking for when you say you want information about black people? >> because -- >> with regards to had cow? >> because you, because it's already rare and you don't know anything, okay? >> uh-huh. >> and then you find out when you do look, when i do go on the web site, it's all white people.

so i'm like, okay, is it hitting black people? do black people catch it? >> but we all get -- >> i know. but this is the stuff that -- you asked me to be -- >> well, no, i'm just concern. >> what i want to know is you want to know about your population. does it hit african-americans differently than it hits caucasian or chinese? i just want to know how is it affecting us as black people. because it's so rare by itself, and then on top of that you don't see that many african -- when we go into these workshops, i can count on my hand how many of us are there, so i'm like, damn, why did my daddy have to get snit how did he get it? so i wanted to know is there information out there, how many black people actually do catch it, any other minorities get it? i just want to know. >> thank you. >> uh-huh. >> yeah. well, you know, without data it's hard to know, you know?

but the fact that it's not very visible among black people as you already suspect, that means nothing, you know? it's frequently the case that these will be written about at length. in fact, you often see language very prevalent in this group of people. which i may be, but sometimes i've looked into and found out it's more prevalent in african-americans. >> is it just not being documented? because you're right, the way to diagnose it is very -- my family pushed, and we kept pushing, you know what i mean? we're even getting the death certificate changed. we're different. i'm wondering how many families are being misdiagnose nosed and how many more african-americans actually do have it. that's why i was wondering in the health field, are african-american doctors talking about it? is it even an interest? is there research out there? >> so misdiagnosis is, you know, certainly likely a problem. it's also the case that african-americans particularly if they're poor are less likely to have access to health care.

so when you're talking about this kind of rare disease, it sounds like your family poured a lot of time and resources into keeping your father with you and lots of people don't have access, so that could be part of the reason why we don't have data that might yield some of the answers that would be, i think, both intellectually important to you and your family. >> thank you very much for the question. i think we have time for one more question. questioner? >> yes, thank you. i've already been coached to keep it simple and quick. i'm going to do so. dr. meltzer, i was listening to your presentation, and you mentioned something about in the '50s it was primarily the schizophrenic diagnosis was primarily for a white population. then all of a sudden, and you used the term out of the blue, it became something that was popularized for african-americans. and i'm wondering, i wasn't quite clear when you say out of the blue whether they genuinely

ignorantly started to make this misdiagnosis, or were they more like being dumb like a fox? in other words, needing a population that they could study, evaluate and do some other different kinds of treatments with modalities? and my last art to the question is -- art to the question, is it -- part to the question is, is it quince coincidental that there was shock therapy that seemed to occur at the same time, and was there any connection? thank you. >> part of the point -- thank you, it's a terrific question, and part of what i think we're all studying, i don't want people to leave here and think like, oh, man, there's no hope for any of us, you know? like whatever. so it's more when you spend a lot of time studying particularly issues about race and ethnicity in the medical system, on one hand i think -- and, hopefully, you've heard this from this panel today, there's a very genuine need for people to get information. doctors want to help people a